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You may have heard it from physicians, from family members who have been doing their reading, or from spinal cord injury survivors who go to other doctors or who were treated at different hospitals or rehabilitation centers: "You're going to develop cancer of the bladder if you keep that catheter in." Are they right? No one knows. Is the risk of bladder cancer higher in spinal cord injury survivors? Yes. Is it further increased by using an indwelling catheter? Again, yes. Is the risk unreasonable? Only you can make that decision. Are there things you can do to reduce that risk? Probably. The key lies in knowing your own risks, understanding your choices, and making the necessary tradeoffs, based on solid information.

Three Pieces to the Puzzle:

There are three different pieces to the bladder cancer puzzle. All of them are important for understanding the big picture. First, there is incidence. Just how much more common is bladder cancer among spinal cord injury survivors? How great are the chances of developing it? Second, there are risk factors. What are some of the things that increase-and decrease- the risk for bladder cancer? Finally, there is you. What can you do to change, lessen, or just understand those risks. It's a complicated picture; if you still have questions after reading this, get more information.

Incidence:

The truth is that bladder cancer is more common than in the general population. However, in reality, it's a very rare disease in nondisabled people that becomes somewhat more common among SCI survivors.

In the general population, the incidence of bladder cancer is about 1 person in every 5000.1 That's less than 1%; less even than 1/10th of 1%. In spinal cord injury, the most commonly quoted overall incidence seems to be around 150 in every 5000, or 3%. This is an average, based on the findings of many different studies. Some studies showed lower cancer rates. For example, a 1991 study of 2900 spinal cord injury survivors at three US hospitals found eight cases (less than 1%) of bladder cancer;1 in an earlier study at Stoke Mandeville Hospital in England, there were 25 cases in 6744 persons (4%);2 and out of 1052 new admissions at a veterans hospital in Virginia, ten diagnoses of bladder cancer (1%) were found.3 Finally, at Craig Hospital, when the records of 2660 former patients with SCIs were examined, 13 cases of bladder cancer were identified (less than 1%).

So, just for some perspective: even though bladder cancer may be 100 times more frequent in SCI survivors than in the general population, it still isn't extremely common. A non-disabled woman's chance of developing breast cancer is greater-1 in 8-than an SCI individual has of developing bladder cancer. And, within SCI itself, complications like pressure sores, spinal cord cysts, hyperreflexia, and kidney failure are much more common, while illnesses like heart disease and respiratory complications account for far more deaths.4

Risk Factors:

There's more to know: indwelling catheters-urethral catheters, "foleys," suprapubic cystostomies, "super-tubes"-do tend to bear the blame for this increased risk. However, that may be an over simplification of the problem.

In fact, it seems likely that several different factors interact to increase the bladder cancer risk for SCI survivors. Indeed, even catheter-free survivors, or those who use intermittent catheterization, have higher bladder cancer rates than the general population.2,5

Bladder Irritation is the key:

Most of the factors increasing this risk for bladder cancer relate to one thing: irritation of the bladder-both chronic and repeated. Many scientists and researchers suspect that spinal cord injury, because of the way it changes the urinary system and alters the environment inside the bladder, may increase the amount and types of irritation the bladder is subject to.

One big irritant is urinary tract infections; the more frequent and more severe they are, the more irritation they may cause. And, they seem to play a role regardless of whether there's a catheter present. In addition to the irritation they cause, some researchers suspect that urinary tract infections cause the release of a substance in the bladder, called nitrosamine.2,6 This substance, itself, may enhance the development of cancer-in much the same way that cigarette smoke may enhance cancer formation in the lungs. Indeed, the effects of bladder infections and nitrosamines may partly explain why people who don't use catheters-whether able-bodied or SCI survivors-sometimes get bladder cancer, too.7

Bladder stones are also potential irritants.6,8,9. Stones have been studied less than urinary tract infections, but their role seems obvious. First, they're believed to occur because of some irritation-a stray hair, grit, sediment- already present in the bladder. Second, when not removed, bladder stones become a source of irritation, causing mechanical or physical irritation within the bladder and fostering urinary tract infections, which themselves cause irritation.

Smoking may be another form of irritation, and smokers do face an increased risk of bladder cancer.6,7 Are spinal cord injured smokers at even greater risk? Possibly. Carcinogens, like those found in cigarette smoke, may be carried in the urine. One researcher found evidence to suggest that the presence of urinary tract infections-which many SCI survivors have-may make the bladder even more susceptible to these carcinogens.6

The catheter's role:

Still, without a doubt, the catheter itself is the largest potential source of irritation. In some people, tumors have been seen inside the bladder where the catheter rubs, and in the path where the catheter lays.5,10 The incidence of cancer is still much higher among those who do have indwelling catheters than among those who use external collectors, intermittent catheter-ization, credé, and most other types of bladder management. In the Craig Hospital study of 2660 SCI survivors, indwelling catheters were found to increase the risk of cancer 3.8 times, compared with SCI survivors who did not use indwelling catheters.

The biggest catheter-related risk factor seems to be how long the catheter has been in place. Some researchers have reported that cancer rates go up the longer people use indwelling catheters.9,11 In the Craig study, the cancer risk in the 2660 people studied was only 0.2% during the first 10 years. But, by 30 years, in a group that was relatively small in size, the risk of bladder cancer had risen to 9% for indwelling catheter users.

Another catheter-related risk that has been suggested is a factor called the "era of care." Some physicians believe that people most at risk are those who were injured long ago-before modern antibiotics, anticholinergic drugs, and catheters made from safer, non-rubber materials, were available. Some even believe that bladder cancer incidence rates will be lower among more recently injured SCI survivors who are treated with today's more modern methods.

Diagnosing Bladder Cancer:

The most common symptom of bladder cancer is blood in the urine: blood that is chronic or recurring and that does not appear to be related to a urinary tract infection. However, because many other things-less serious than cancer-can cause blood to appear in the urine, the best way to monitor the bladder is by having a urologist examine it.

With an instrument called a cystoscope, the urologist can see inside the bladder. If any suspicious areas are noted, he or she may recommend a biopsy-a procedure in which a small piece of the bladder wall is scraped away and examined carefully under a microscope. Though biopsies may cause some blood-tinged urine for a day or two, they're not usually painful and can be done fairly simply at the same time as the cystoscopy itself.

Biopsies:

It's fairly common for the biopsy report to come back with a diagnosis of squamous metaplasia. This is a medical term for a microscopic cellular change that is often seen in the bladder. Some scientists believe that microscopic squamous metaplasia is a warning sign of a particular kind of bladder cancer-squamous cell carcinoma.11 Both squamous metaplasia and squamous cell carcinoma are believed to result from those already-described chronic irritations inside the bladder-stones, UTIs, catheters. Therefore, these scientists argue, both of these conditions should be of concern to SCI survivors, especially those who manage their bladders with indwelling catheters.

However, the truth is, researchers do not agree on this issue. Many others argue that while squamous metaplasia may be a precursor to cancer it is not always something to worry about.

Why the controversy? Several reasons. Squamous metaplasia is extremely common among both nondisabled people and spinal cord injury survivors.3,12 Many people have squamous metaplasia and never develop bladder cancer. In one study of 450 non-disabled people who already had squamous metaplasia, none developed squamous cell cancer!12

Among SCI survivors, as many as 80% of catheter users may have squamous metaplasia,8 and common sense dictates that not all are going to develop bladder cancer. In another Craig Hospital study, for example, 172 spinal cord injury survivors had bladder biopsies. All of them had indwelling catheters- most were suprapubics. More than half of the 172 people who were tested did have squamous metaplasia. None of them were found to have squamous cell carcinoma.

Interpreting Risk:

What does all this mean? Before we talk about what you can do to minimize your risk for bladder cancer, let's sift through what's been said so far:

As a spinal cord injury survivor, the risk of developing bladder cancer is higher than if you had not been spinal cord injured. With an incidence of about 3% among all SCI survivors, it's not astronomical, but it is measurable.

The risk of developing cancer is increased further if you use an indwelling catheter. This is probably because of physical or mechanical irritation-by catheters rubbing inside the bladder -as well as chemical irritation caused by frequent bladder infections. And, it seems the longer the catheter is in, the more the risk goes up.

Biopsies are very important for early diagnosis of bladder cancer, but the significance of squamous metaplasia as a warning sign is extremely controversial. However, it probably is safe to conclude that not having squamous metaplasia is better than having it.

Decreasing Risk:

Regardless of whether you are catheter-free or use an indwelling catheter, probably the best advice is to be meticulous in all aspects of your bladder management program. Follow all physician recommendations about medications, fluid intake, cleanliness, monitoring, and follow-up. Most important, stay up-to-date. Ongoing research may make new information available that could be beneficial to you.

If you do happen to have an indwelling catheter, here are some specific things you can do to reduce your risk:

Decrease the amount of irritation in your bladder:

If anticholinergic drugs were prescribed, use them. These drugs-Ditropan, Oxybutinin, Daricon-relax the bladder, and as a result, decrease the amount of irritation it is subject to.

Each day, switch the leg that you put your drainage bag on. If, because of functional reasons, you can't do this, then try putting your night bag on the opposite side of your body as your daytime leg bag. This, in theory, should move the catheter tube and its balloon within your bladder so the same spot on your bladder wall doesn't have all the irritation.

Use the newer, less irritating hydrophilic catheters. They're lubricated and made of softer materials which makes them less irritating. But, regardless of which type you use, change it as often as recommended. This is not the place to try to save money!

Get yourself checked regularly for stones. Repeated bladder infections and grit in your urine are some possible signs that you might have stones. If your urologist does find bladder stones, have them removed.

If you have concerns about indwelling catheters, the irritation they cause, and bladder cancer, you may want to consider the tradeoffs-like convenience and familiarity-of shifting to a catheter-free bladder management program. However, keep in mind that we just don't know how much a change in your program will decrease your risk. Will your bladder return to "normal"? Probably not. Will future, continued bladder irritation be lessened? Probably. Talk it over with your doctor.

Prevent infections & stones:

Drink lots of water. Drink enough so that you put out 3 to 4 quarts of urine a day. Everyone's body uses different amounts of water at different times, so don't assume that taking in 3 to 4 quarts will guarantee that you'll put out that much; it may take more.

If, because of your own bladder history, your physician recommends that you take maintenance doses of medications to suppress bacterial growth, do it.

If you feel like you're having a lot of bladder infections, work with your doctor to try to identify-and eliminate-the cause. Two or three urinary tract infections a year is probably typical of most SCI survivors; a lot more is a problem, not only because of the possible bladder cancer risk, but because of the impact on your genitourinary system and on your health in general.

Maintain personal cleanliness to prevent your exposure to infection-causing bacteria. Be meticulous in your catheter-changing technique. If you have a suprapubic catheter, keep the site around the catheter shaved and clean. Use chlorine bleach and water to keep your leg bags, night bags, and tubing clean and bacteria-free.

Decrease your exposure to cancer-causing agents in general:

Don't smoke. If you do smoke, quit now.

Learn more about antioxidant vitamins. These include Vitamin C, Vitamin B6 and Vitamin E and other vitamins. Magazine and television reports tell us they may reduce the effects of cancer-causing agents in the body. Some preliminary research seems to show that antioxidants may reduce recurrences in people who already have bladder cancer.13 Although, in theory, this suggests some possible role for antioxidants in the prevention of bladder cancer, this has yet to be proven. If you're considering taking these-or any other vitamins-in more than their recommended dosages, talk with your physician.

Remember, infected urine may contain substances that increase cancer risk. Call your doctor about any symptomatic bladder infections you have. Symptoms include fever and chills, cloudy, smelly urine, drainage around the catheter, unexplained autonomic hyperreflexia, and pinkish or bloody urine. Don't ignore bloody urine; it can be a warning sign.

If you have an indwelling catheter of any kind, follow the cystoscopy schedule recommended by your urologist or SCI physician, as these exams can be a means of early detection. If you've had your indwelling catheter for more than 10 years, you probably won't want to go more than a year or two between cystoscopies. And, based on your "cysto" results, your doctor can then tell you if a biopsy is useful or indicated.

You can't undo your spinal cord injury, but taking these steps will help minimize your risk for bladder cancer. To come back to the big question: Should you abandon your indwelling catheter program for one that is less invasive? There's no easy answer. If everything else is equal and your bladder could work just as well without an indwelling catheter, and if your independence and quality of life would not be affected by the program you chose, it probably would be safer to go with a program that does not involve an indwelling catheter. But, it's seldom that simple.

The key questions to ask yourself are:

How many years have I used an indwelling catheter? Is there a point at which the increasing cancer risk outweighs the catheter's convenience and independence?

Can another type of bladder management decrease the infections and other complications I have? Can that method work for me? Can I accept any decrease in convenience or independence that might be part of a new bladder program?

What method allows me to lead the kind of life I want to lead-and need to lead-now?

Answering these questions is difficult and complicated. Get the information you need about your own unique situation so you can weigh the tradeoffs. Research, your doctor, your family and friends, and other SCI survivors can help you, but only you can make the final decision.

This is one of more than 20 educational brochures developed by Craig Hospital while it was a federally-funded Rehabilitation Research & Training Center on Aging with Spinal Cord Injury. The opinions expressed here are not necessarily those of the funding agency, the National Institute on Disability and Rehabilitation Research of the US Department of Education.

For a hard copy of a METS brochure, click on your selection above and hit the "print" button on your browser. If you'd like to ask for one directly from Craig Hospital, please contact Irene VanCleave in writing, by calling 303-789-8202, or e-mail Irene at irene@craig-hospital.org.